Rach, Many of us know that same feeling - when doctors treat you like you're fine when you're not, look at one disease out of thousands and say it's not that so it's not anything and then walk away as if that's acceptable professional medical behavior. It's not.

First of all, don't give up. I know you are worn out right now - I know that feeling all too well. So rest up, surround yourself with positive things and people and recover.

What they have done is to supposedly "rule out" MG. There are people with MG who don't have antibodies or a positive SFEMG. I know they love their alogrithms and gold standards but the truth is that not all patients fit so neatly into them.

They have not, however, ruled out CMS, at least from what you've said. CMS often has a negative SFEMG. At least that's what I've read and heard from the CMS expert at the University of California at UC Davis. But he's also a hypocrit who said he wouldn't see anyone who didn't have an outright positive EMG. He gave an interview, in their old "Pulse Scripts" that said they often have to go to the CMS blood tests and then, if necessary, the CMS specialized muscle biopsy (which is different and more dangerous than a "regular" one). Of course, he said that about children. I think they see we adults as dastardly, as if we don't deserve the same care.

Why they won't at least run the CMS blood tests is beyond me. Your clinical signs and symptoms point directly to a fatigable muscle disease. The list of diseases that cause fatigable weakness is very short!!! Did they even consider LEMS? What about a mitochondrial myopathy/cytopathy?

I think that their (UK) idea of health care is medieval. Instead of "Do no harm" it's "Do as little as possible."

So what can we do? How can we help? I know how raw you are right now and probably can't get past the swearing and alternating crying to even think straight let alone breathe well. But after you rest up, think about what can be done. Contact news organizations? TV shows? ALL TV medical shows?

I am sick that you are not getting help. If they take away your Mestinon, which has been proven to make you better, what the heck will you do? I'm scared for you.

Doctors do more harm to patients with their apathy, lack of diagnostic skills, lack of caring, lack of thinking and inability to get beyond prejudice than they ever do WITH their doctoring after being diagnosed.

I am simply so sorry, Rach.


Annie